Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

I didn't write anything to dispute any of that, like I said I fully support the cause and would love to see Ampligen approved. My concern is over supporting extreme tactics like hunger strike and whether that would actually help or harm the cause. It may help but we should not overlook the harm it could do. Historically extreme action of that nature whether real or perceived has been a disaster for the community, it has reinforced prejudices of us being a crazy irrational and has provided ammunition that has been very successfully and repeatedly used against us. It brings no evidence or rational argument to the table and may even be taken as a sign that we have run out and so are resorting to other strategies.

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Was Ghandi perceived as nuts? No, he was perceived as an annoyance by the British and a hero by the people. Either way, he got what he wanted, which was to get India independent of British rule.

Done. Here is my submission to the Human Rights organization. It can also be tweaked to send to NBC, CBS, and ABC. Copy if you would like.

An NBC affiliate in Reno, NV, ran a story about a CFS (Chronic Fatigue Syndrome) patient, Robert Miller, who is speaking out concerning the FDA's possible disapproval of Ampligen, the first and only drug with proven safety, and effectiveness for a subset of the 1 million U.S. CFS patient population.

The patient community's need for treatment is so urgent that Bob is using a hunger strike as a tactic to attract attention to the forthcoming approval/disapproval of Ampligen. Ampligen is the first and only drug in the pipeline for CFS patients, and it’s been in the pipeline for twenty years. Ampligen has improved lives for so many. Ampligen patients were able to go back to prior employment. They rejoiced in the ability to live their lives again, but without Ampligen they will backslide right into their beds and remain there until another treatment comes around. With Ampligen’s disapproval, it is unlikely that CFS will see new drugs in the near future.

I would ask you to bring this newsworthy event to a broader audience, national if you will, so the public will know the plight of CFS patients with regard to Ampligen, a drug which the patient population has waited 20 years to hear "Approved!" by the FDA..

Has backing this tactic really been thought through, do we want to be promoting the message that hunger strike is a legitimate campaigning tool. I fully support cause and publicising the supporting evidence but the decision should be based on the strength of the evidence alone not coerced under threat of self harm. It may well even backfire as decision makers would not want to risk it appearing as if such actions are effective.

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If Bob doesn't get Ampligen, his quality of life will be so poor that he might as well be dead. That's the message. Ampligen is safe and effective for a subset of patients. The FDA is still waffling, for no apparent reason. This battle with getting Ampligen approved has been going on for at least 20 years!

I'm not a big believer in conspiracy theories, but think about this - if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham. If you were the govt. wouldn't you waffle?

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Hi all, Day 6... I am low on energy, but I would like to make a few thing clear:
1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what if one day they get ill, I must do whatever it takes to Awaken our federal health agencies.
2.As far as what will the medical establishment think, I can only tell you what the experts in the field think including CFSAC, they know me and know I am of sound mind and that includes FDA and HHS.
3.The evidence, if one is unwilling to hear the evidence, it does not matter what one says. At the FDA panel meeting, the Sponsor tried to address concerns of FDA several time, but the chair would not recognize the Sponsor to respond. You will need to watch the Webcast.

I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

Hi all, Day 6... I am low on energy, but I would like to make a few thing clear:
1. I am not doing this only for the approval of Ampligen, that is only a heavy straw FDA has placed on our illness, I do this for the patients suffering daily, and yes that includes me, but I have children and what if one day they get ill, I must do whatever it takes to Awaken our federal health agencies.
2.As far as what will the medical establishment think, I can only tell you what the experts in the field think including CFSAC, they know me and know I am of sound mind and that includes FDA and HHS.
3.The evidence, if one is unwilling to hear the evidence, it does not matter what one says. At the FDA panel meeting, the Sponsor tried to address concerns of FDA several time, but the chair would not recognize the Sponsor to respond. You will need to watch the Webcast.

Thank you all for the support,
Bob Miller

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Thanks, Bob - you clearly have not only a sound mind but an exceptionally strong one! I hope you're taking very good care of yourself.

Thanks, Kati - Bob says in this video (in which he really doesn't appear well at all and says he was going into kidney failure so is now on a saline drip) that he wants us to keep emailing and (for US people) writing to our representatives, use our media contacts and send any contacts to him at bobmiller42 [a] gmail.com.

He says it's looking unlikely that Ampligen will be approved by the FDA and that the decision might come today - but he's clearly got some plans for what to do if the decision goes against us.

I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

I'm going to call the Wall Street Journal, 212.416.2000 and the Washington Post, 212.334.6000 and USA Today,
703.276.3400 about our campaign and the interesting delay. I read it's best to call directly to get a news story in a paper. Perhaps our efforts are having some effect as I imagine it's strange for the FDA to overshoot a due date.

Good luck to us all. Take care Bob.

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Rooney just sparked an idea in me, and I sent an email to Amy Dockerson Marcus of the Wall Street Journal along with Bob's press release. Unfortunately, the email bounced back to me saying "server error: invalid recepient". I obtained her address from a recent article that she wrote in Jan 2013. If anyone has another address besides amy.marcus@wsj.com please let me know. Otherwise, I will try sending again this afternoon directly from my email instead of using the link from the WSJ.

Rooney just sparked an idea in me, and I sent an email to Amy Dockerson Marcus of the Wall Street Journal along with Bob's press release. Unfortunately, the email bounced back to me saying "server error: invalid recepient". I obtained her address from a recent article that she wrote in Jan 2013. If anyone has another address besides amy.marcus@wsj.com please let me know. Otherwise, I will try sending again this afternoon directly from my email instead of using the link from the WSJ.

Hang in everyone and prayers going up for Bob!

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Good idea - she seems to have a LinkedIn page but I've no clue how to access that stuff:

Thanks, Kati - Bob says in this video (in which he really doesn't appear well at all and says he was going into kidney failure so is now on a saline drip) that he wants us to keep emailing and (for US people) writing to our representatives, use our media contacts and send any contacts to him at bobmiller42 [a] gmail.com.

He says it's looking unlikely that Ampligen will be approved by the FDA and that the decision might come today - but he's clearly got some plans for what to do if the decision goes against us.

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I don't believe Bob said he was on IV saline, he said he was drinking a saline solution

If you click on the YouTube link on Bob's video, then it will open up in YouTube. Then click on the Share tab. You can share the video on your Facebook, Twitter etc. I've been doing a Facebook share for each new video.